Friday, June 22, 2007

Q news

From a site for parents of kids with Polymicrogyria:

Polymicrogyria (PMG) is a rare brain disorder of neuronal migration resulting in structurally abnormal cerebral hemispheres.

Yeah. I don't know what to say either. It's not news, but sometimes it rolls over a person like it is.

Several days ago, Q began having a series of exaggerated startles as he was trying to fall asleep. These were occurring seconds apart, as he was drifting off, waking him to the point that, after several, he would just give up trying to sleep. As I was telling his SpEd teacher about this today, I realized that it's actually been going on for weeks, but as it seemed to be happening only when he was in his car seat, I didn't think too much of it. I mean, we're always having some new funky variable, why not startling in the car seat when he's tired? These seriously cut into his sleep time. When he sleeps less, it becomes more difficult for him to sleep, his tone drops, he gets sad and cranky. It's a wretched loop.

After a call to the neuro guy, Q is now taking a teeny dose of clonazepam (Klonipin). I feel horrid, like I'm drugging my baby. Not that such a thing changes the legitimate need for the meds. (Bang, bang, bang goes the head on the keyboard.) After having now 5 doses, he seems to be less sleepy but his tone is waaaaay down at least part of the time, making it hard to work on things like developing good trunk muscles for sitting. (Bang.)

I'm sure he'll adjust, all is well or will be and on we march.

I just don't much like that my 17 month old son whose father left when I was almost four months pregnant has to take freaking benzodiazepines. (Bang.)

Not that any of that is material.


How about some gratitude? It's raining, so we won't have to water the giant garden. What else can I list for good stuff? The kids have been having a blast at campmeeting this week--I actually got to listen to a great sermon last night on forgiveness. The best part of the new meds is that we haven't had another 38 plus hours wherein Q only sleeps for only 6.5 of 'em. That's super. Also, a roof over our heads, having just enough money to afford both medicine and new unders for the growing brood. Having good, really good food and friends and family to share it with. Q seems to be really trying to talk--making different noises at appropriate times. Yelling "Ba!" when S was talking about wanting a bath. Baths are his Nirvana. If he could breathe water he would, just to show how much he completely loves it. So. Also, S keeps all of us here in stitches. Her dad and I used to always be smiling at each other over the tops of the kid's heads--more recently it was K and S. They're smart and cute and awesome kids, very verbal and fun-ny.

I must be tired, because I'm having a hard time being cheery, though there's plenty to be cheery about. So I'll head off to bed and come back when I have something nice to say. Heh. This is perfect because I told the kids tonight on the way home that unless they could be nice, they could close their lips and be quiet. For apparent lack of material, they were stone silent. Yeah.



sleepy jeanne said...

sending good thoughts and sleepy vibes in your direction.

Kelli in TN said...

A hug for you (((())))) I wish I had something wonderful to say.

You are doing great, you really are. And can you at least feel the sisterhood praying for you?

Rest well this evening.

Lonnie said...

Hi, I am Daniel Spranger's father. I enjoy reading your Blog and checking up on Q and your family. We also had Daniel on Klonopin for a brief period of time. And it was the same results. Although it helped his seizures and helped him sleep, it also destroyed his personality and his muscle tone. Daniel has these startles once in a while too. They are a lot less frequent than they used to be and not nearly as severe. I hope Q gets over these episodes and will be able to resume sleepfilled nights!